Families First Families First AprilMay2017 : Page 5

STRONG 1 2 ARLO STRONG A Journey of the Heart By Emily Glover I t never entered my mind that I would have anything but a healthy baby. I never thought I would know what it felt like to love a baby so deeply while knowing he might not live past his first year, let alone his first week, of life. Life is anything but predictable. On October 26, 2016, during the exciting routine twenty-week ultrasound where our biggest concern was finding out our baby’s sex, we were told our precious baby boy, Arlo, appeared to be miss-ing the left side of his heart, and may have Hypoplastic Left Heart Syndrome (HLHS). HLHS is a congenital defect where the left side of the heart, the side that pumps oxygenated blood out to the body, fails to develop. This is fatal if not repaired within the first week of life with open heart surgery, plus two more surgeries by the time the baby is two. The only baby I had heard of with HLHS did not come home from the hospital after his first surgery and so my point of reference was bleak. To say the least, we were shocked and a little in denial. My husband Justin and I both come from huge families who produced many healthy children. Why would our son be different? After a scheduled Cesarean delivery, Arlo was born at 10:57 AM at CS Mott Children’s Hospital in Ann Arbor: 7 pounds, 3 ounces, and 20 inches of perfection. I was allowed a brief glimpse of him before the nurses took him to the next room to assess him, and hook him up to the medicine that would give him a few days to adjust to life outside my womb before he would need sur-gery. Once they were done sewing me up, they wheeled me into the “Nest” room to see him before taking me to recovery. I had been told I might not get to hold him once he was hooked up to the medicines and internal monitors. To my joy, one of the nurses let me hold him for a few minutes. All too soon, our first bond-ing experience was over. Unlike my previous post-partum hospital stay, when my first child, Otto, was born, we would not be able to share a room; I would not be able to nurse him, change his dia-pers, or dress him in his first outfits. My heart ached for that loss. During the three days after his birth, despite being in pain from my C-Section, I went to his room as much as I could, often in the middle of the night. I took tons of pictures, kissed him, and read to him from Harry Potter. The last night before his surgery I cried for the second time since his diagnosis. I felt guilt about splitting my time between the boys, even more so with Otto who wanted my attention. I was in a lot of pain because I was not taking the pain medication, to be more alert. I felt sad and sick that my baby had to go through an open heart surgery the next morning, and the pain he would feel, and what obsta-cles he would face. In the small hours of the morning, I slowly and painfully walked to Arlo’s room. I held him close, sang our favorite lullabies, told him I loved him and gave him a million kisses as the clock ticked closer and closer toward his surgery. I had seen post-surgery pictures from another HLHS mom, so I knew what the room and his body would look like; however, no one can prepare you for seeing your child like that. The num-ber of tubes and wires, IVs, bloody bandage down his chest, and machines hooked to a 7-pound baby is daunting and devastating to see, but is also an incredible reminder of how strong babies are. Despite all the necessary equipment keeping Arlo alive, he recov-ered like he was sprinting to the finish of a race. Most of these surgeries take four to five hours. Arlo’s took three. Most babies leave the OR with their chests open to accommodate swelling 3 1. Four days old and in recovery after first sur-gery. 2. Happy Home-coming. The day Arlo is released from the hospital. Justin and Otto, Emily holds Arlo. 3. Arlo’s sec-ond surgery is completed. 4. Family shop-ping trip about a week after second surgery The confirmation that indeed Arlo had HLHS struck us hard. I remember my heartbeat quickening, thudding heavily, and my face becoming warm as my throat ached with the effort not to cry, which only lasted until I saw my husband becom-ing upset. As the technician continued taking pictures of his dime-sized heart, I adjusted to this new reality. By the time we went in to sit down with the doctor something had taken me over. I became a fierce determined Mama Bear confronted with a threat. I knew I had little control, but I could prepare, make sure he was as healthy as possible, and love him fiercely the whole time. That fierce determination surprised even me. I have no idea how I could be calm, focused, and comfortable talking about my son’s possibly fatal heart condition. The only thing I can attri-bute my behavior to is that my mind went into survival mode, and just like that, his heart in all of its abnormalness became the norm. It wasn’t that I wasn’t scared or upset knowing my son was going to be operated on, but it was necessary for his survival and there was nothing I could do to make his heart whole. The only thing I could do was take everything day by day. 4 and to make it easier to go back in if there is an emergency. Arlo came back with his chest closed. The same day as his surgery, they started weaning him off blood pressure medicine. By the second night they started to wean him off the breathing machine. One of my biggest reality checks came when a baby in the next curtained ICU bed coded right in front of me. Within seconds, a swarm of nurses and doctors with machines were there, doing chest compressions on this tiny body and yelling commands back and forth while bells and sirens blared their warnings. I was ushered out continued on page 7 April/May 2017 • Families First Monthly • 5